Adriana after her birthday

highlight of Adrianas year in pictures

New pictures

Adriana turned 1 on March 6th which was a Saturday. She is a big girl now and just loved when we went out for lunch and they sand her happy birthday. I cried I couldn't help seeing her eyes just light up it was the best moment for me and she loved it. I wish it was her birthday every day. Well we have clinic on wend and lets see what they think. I pumped her feeds to 2cc an hour on Saturday. I checked her and she isn't dumping it did go up just a tad bit but not a lot. I will be adding pictures of Adriana and her birthday dress.


Adriana before going to visit grandma on her birthday


Mom I wasn't ready yet


Big Girl of course shes 1


Adriana ready for summer


Adriana styling a new hair do


Adriana and Daddy at the Oakland Zoo

So everything is starting to get back into what it use to be. Adriana finally came home yesterday well we both did. She was excited when we got into the car and was just happy to leave the hospital. She will be off of TPN for 2 hours a day and as time goes by she will be off more. So yesterday they wanted to double check her sugars after a hour of ebing off she was at 81 and after 2 she was 94 those are great numbers. Just thinking of how far she has come gives me goose bumps. She will be 1 year old on Saturday. It's been a whole year of tears and sadness of how sick she was, whether not she was going to get better, so many things. Look at her now she is a very happy baby she doesnt hold any grudges with anyone no matter what. She enjoys her life and laughter. Thank you to omegaven Adriana is living a healthy life, does not need to be trandsplanted at this moment and gives her the time to get her gut to start working. She will be going up on her feeds and see how she does.

So we are still here, another day in paradise. Well we will be going home today after Adriana is tapered off her tpn. They will taper her off for 2 hours and check her blood sugars, and after that we can com home. She will be takeing vancomycin home with her and her last dose should be the 8th, next Monday. She is doing good has been since we have been here, and I know she wants to just go home. When Adriana is home she will be off her TPN for 2 hours daily and with time I was told we would have her diconnected more often. I guess we will see, 3 more days untill her birthday. She will be the big 1, and eat lots of cake, well not really eat but sure will let her try and take lots of pictures.

So yes we are still here in the hospital as inpatients, the only bacteria that grew on Adrianas blood culture was staph the good thing is it could of been worse. It is the exact same thing that grew the last time we came in with an infection. We will hopefully be out by tomm and she will continue her antibiotics at home, for about 10 days. The countdown for her birthday starts she will be a year old on Saturday

Wend night Adriana was running a fever so I decided to call the GI doctor on call and of course he had me bring Adriana in. We slept the night in the ER and the next morning we had a space waiting for us in the nursery. They did take some blood cultures from Adrianas line and sure to say we got posotive results she had staph and I cant think of the other one right now. She was started on vancomysin and that will help clear her line. We only have one neagtive culture right now and need 2 more in order to go home on antibiotics wich I already know how to give to her. I am more scared she will catch something here and take it home with her. So we had a nurse that honestly is nice but seems that she has no idea what to do, she did many things wrong like picing up lines from the floor and wanting to use them, to laying out all of the alcohol pads on a chair w/o being in there packets and wanting to use those too.It was like she was trying to contaminate Adrianas line I don't know what she was thinking or where she went to nurisng school. I need to watch the nurses like hawks here, so have some good news. Friday we disconnected Adriana to see if she is able to tolerate being tapered off of TPN, and if so for how long without her sugars dropping. We have tried many times and have not succeded but this time to everyones suprise she was able to tolerate 7 hours 1/2 and then her sugars dropped and they drew a lot of labs. I was told that her liver does not have enought glycogen stored so tht is why her sugars drop. 7 1/2 hours is amazing to have her disconnected I would of been happy with 1 or 2 since she has been running at 24 daily anything would be great. Last time we tried tapering her, her liver was much sicker and bili much higher but thanks to omegaven her bili has come down a lot and is almost normal and she is able to come off of tpn. That is the only good thing we got from being here, I can't think of anything else.I hope we are abe to go home soon, this Saturday March 6th is Adrianas birthday she will be 1 year old. I hope we are out by then for her birthday so we can throw her a little something and celebrate with the family. I would hate for her to spend it here in the hospital. I will keep everyone updated with what happens and when we are able to go home from here.